As
promised, I will now share with you my personal experience.
My test results are in!
GETTING STARTED
Following are the steps I
took.
·
I
went to https://TheFibromyalgiaTest.com/ scrolled to the “click me” button in the “Ready to Get
Started” area at the bottom of the page.
·
The
next page - The FM/a®
Test must be authorized by a licensed physician. My rheumatologist ordered the test for me.
*Note: If you do not have a physician, please call 310-277-4600, M-F, 9am-5pm (PDT) and we'll help you find a fibromyalgia-friendly doctor at no charge.
·
I
printed the Physician’s Authorization
Form, filled
out what I could, and left it at my doctor's office for him to sign. My doctor's nurse, who is a peach, then faxed it to the
number on the form.
·
Next, I answered "Yes" to 11 of the 12 questions. *You must be able to answer yes
to at least four questions.
·
I filled out the “Customer/Insurance
Information Form”.
DETAILED INSTRUCTIONS
Within
a few days, I received a phone call from the coordinator letting me know my insurance provider authorized coverage (as are many). She answered all my questions and reassured me the test kit would include step-by-step instructions. (Something very important to those of us with fibrofog).
Next:
Next:
· The kit arrived within a few days, along with a prepaid Fed Ex bag.
·
Paperwork included physician contact
information, a medication list form, and a
patient information sheet. (
*Note: The
medication form instructs, “Do not take the following drugs for 5 days prior to
having your blood drawn, steroids, anti-cancer treatment drugs, or
anti-rejection transplant drugs”.
·
I prearranged the Fed Ex pick up for the
same day my blood was drawn.
·
Quite helpful is the specimen
submission checklist because it has specific instructions on what to include with the
specimen, handling and packaging of the tubes, Fed Ex copy, a contact number if
you have questions, and the phone number for Fed Ex.
· The specimen must be received within
24 hours after the blood is drawn.
·
DO NOT draw blood on Friday because "Overnight" express will not deliver until Monday, which the coordinator had told me during our phone conversation.
I HADN'T THOUGHT OF THAT!
I
hadn’t thought about all of the things that are included in the cost of the test.
·
Arranging for a phlebotomist to collect blood samples.
·
Pre-authorization with your
insurance carrier.
·
Phone consultation regarding
instructions and concerns.
·
Working with physicians, or finding
a physician if necessary.
·
All supplies.
· Expedited mailing.
·
A specialized lab for running the
results.
·
Dr. Gillis being personally
available to patients to answer any questions. (That’s unheard of these days.)
MY RESULTS
I
mailed my specimen on a Wednesday, and the results took about a week.
FM/a®’s
test results are based on a 1-100 scoring system; patients with active disease
activity score 51 and above. (My personal information was purposefully covered.)
MY SCORE = 96
“FM/a® is a multi-biomarker-based test which concerns immune system white blood chemokine and cytokine patterns. Patients with fibromyalgia have a significantly dysregulated pattern regarding these proteins.”
The FM/a® test gives me concrete objective evidence that I can share with all those on my healthcare team. No more questioning that my symptoms are due to a biological problem. If you have read Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome and Myofascial Pain: The Mind-Body Connection, you know how important it is that I make sure all my doctors include the report in my medical records.
It is equally reassuring to know that I contributed to changing the way fibromyalgia is perceived.
NOW WHAT?
After
decades of literature review, maintaining a website and blog, contributing in the
past as a fibromyalgia
expert at Sharecare, and writing for ProHealth and Health Central, my work and my diagnosis are validated. Will I continue to follow my own
advice for living with fibromyalgia and the overlapping conditions I experience? Yes, absolutely. The coping strategies we discuss in our books are paramount to emotional, mental, and
spiritual healing for any chronic illness.
THE CONCLUSION IS THE BEGINNING
Pioneers
are those who trudge forward among adversity. Because of Dr. Gillis, Dr.
Wallace and the many devoted people involved in this endeavor, as Dr Kevin White said in his book, Breaking Thru the Fibrofog: Proof that
FIBROMYALGIA IS REAL!
With
the FM/a Test® available to researchers, there leaves no margin for error in identifying
study participants. And, like HIV and AIDS, one day the consequences of fibromyalgia will be arrested.
In healing and hope, yours truly, Celeste
In healing and hope, yours truly, Celeste
Additional reading:
- About the FM/a Test
- A Year of Fibro: Musings, Writings, and Opinions, includes links to all my freelance writing, blogs and information from my website on fibromyalgia.
- How is the FMa test different at looking at cytokines-Pain News Network
(Signature
line appended July 2018)
In healing,
Celeste Cooper, RN / Author, Freelancer, Advocate
Think adversity?-See opportunity!
~ • ~ • ~ • ~ • ~ • ~
Learn more about
Celeste’s books here. Subscribe
to posts by using the information in the upper right hand corner or use the
share buttons to share with others.
Posts
10 comments:
I had not heard of blood tests for fibromyalgia but I always knew that someday medical science would find some definitive testing for the disease. I remember back in the day when my PCP thought Fibro was a psychiatric illness, some still do I guess! Came by way of Chronic Illness Bloggers.
You are right Emily, some still do consider FM a mental disorder because they are misinformed and mislead by the rhetoric. Misdiagnosis leads to the misfortune of the wrong treatment. Mental illness is very real, and requires direction and treatment by a psychiatrist and a qualified psychotherapist. The 3 medications approved by the FDA are the least effective compared to others. BIG pharma has contributed to the misfortune of many for their personal gain. There are pharmaceuticals that specialize in finding the right treatment too, for these, we pray they will look at medications that address the immune dysfunction of FM.
What would you suggest as treatment. .i take 2 percocete a day and flexrill at night...i am amble to live sort of normal except on very bad days. I have tried all the other meds they did nothing for me so I got off all of them.
Lyn, I have a great deal of information on my website regarding coping and management strategies. Here you go. http://www.celestecooper.com/coping-strategies.html and http://www.celestecooper.com/management-strategies.html
Thanks for being so complete in your info Celeste. I would love to take the blood test. After 31 years with Fibro it would be great to have "proof".
But, with Addison's I can't go without my steroids for that long and live to tell about it.😏
It's great how far Fibro research has come in the past 30 years.
Addison's is another tough one. Fibro is seldom a stand alone disorder. And yes, there has been much joy and much anguish regarding FM research, but for those of us who have watched closely over the last few decades, we have seen progress. Keeping the naysayers at bay can be achieved when such an overwhelmingly painful, multi-symptom disorder gets the research funding it deserves. Thank you for taking the time to comment. Share with others when you feel appripriate. Together we stand.
I'm proceeding with trying to get this test myself... my me/cfs and fibro specialist signed off on it, so we will see if insurance comes through. I find it very exciting, if it is positive, it may help with my application for disability benefits. The only issue I have with it is the company's conflation of CFS and fibromyalgia, which I do not find helpful, and strongly feel are not the same disorder after being diagnosed with both at different times. They feel very different initially, but over time as you have both it's hard to tell one from the other except the PEM/PEF symptom, which I think is very clear cut ME not CFS or FM.
Beka, we write about the differences in our book Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain. I agree, they are indeed different with different diagnostic criteria. While there has been more research since writing the book in 2010, the general underlying research is proving what I found through years of pouring over the literature and thus far, the other information is still timely.
We have had some tainted pools of participants because of the wavering diagnostic criteria and the cross over of several symptoms. Dysautonomia is alive and well in both, though the pathway varies between the two. Now we are learning there are many subsets to ME/CFS making the water murkier.
I am grateful for having the FM/a Test. I have always suspected the immune component. There are too many comorbid disorders to deny it. Whether the immune problems are instigated from brain misregulation or in the periphery (as evidenced by the number of patients with Lupus, RA, autoiommune thyroid disease, etc.) is a question that needs to be answered. Studies on the genetics of FM are finally coming to fruition. Thank goodness we have researchers who think outside the box and refuse to give up. Best of luck with your insurance.
Hi Celeste, this is wonderful news! I was diagnosed with FM in 1989. It's been a long haul but here we are. Persistence pays off. I am currently without a FM specialist because I'm not able to travel to get to one, but will begin the process of having this test done with my current PCP. He seems open to helping in whatever way he can. Thank you for all you do and have done. You are a lady with great persistence!
Sherril, I am so glad you found the article helpful. I know my brain goes on tilt, so I need extreme step-by-step guidance. It is my understanding that more insurance companies are covering the test. Medicare covered mine. So glad to hear you have a receptive doctor. That means the world and more to us. Keep me posted. You can visit my website and connect with me through the social media links I have there. http://CelesteCooper.com
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